Thanks for reading this. I want to tackle this topic in a very in-depth way. I really don’t have a particular strategy on how to do this. The rationale for this mindset is probably because this is such a personal issue for me. And in a huge way, I am still processing the ramifications or late-effects as it is called in medical circles. Late-effects are the residual scars in the form of other illnesses or conditions from cancer treatment. Through the eyes of a care giver is as close as it gets outside of being the individual experiencing a life threatening illness. Those eyes have their own sense of helplessness. But, that is so inconsequential to what a loved one MUST endure to live.
Children who endure cancer and blood disorders don’t truly understand what is happening to them and around them. For Myjoey, he was not told about the grave status of his health until he was almost nine years old. At that point, it was necessary because he was being prepped for an experimental bone marrow transplant. We talked about it with him driving the conversation. The gist was that he always knew something was not “quite right” with how he would feel sometimes, or why he had to see Dr. Altman so much. But, with full disclosure, it all made sense to him.
At this point, Joey had completed 36 months of high-risk treatment on the POG (Pediatric Oncology Group) protocol for Acute Lymphocytic Leukemia T-cell strain. In addition, his first relapse lead to a second round of 36 more months. However, during this second round of treatment he had his second relapse. The bone marrow transplant was his only hope for survival and a cure. For all intense purposes, he was a childhood survivor with a cumulative of almost five years of remission. But, it is the sustainable ones that last much longer and with five years of uninterrupted remission. In regards to this standard marker, Joey was a patient given a seven year timeframe instead. This was due to his high WBC, which was over 40,000 at the time of the diagnosis.
His initial diagnosis with a high white blood cell count or WBC dictated his protocol. This is the standard used to ensure that the right treatment of chemotherapy and other therapies are given to achieve a CURE. Chasing the cure is the main focus for parents of children with these diagnoses. The mental anguish and emotional rollercoaster is something that is hard to articulate. What was clear then and still is – is to help your child survive as you struggle to do the same. This is a club that no one was to be a member of, but one that you are forever a part of. So, you make the best of the situation. To achieve this, you live life to the fullest every second of everyday that you are given.
The psychological impact of treatment on childhood cancer survivors will be the topic of my next blog post. Of course, it will be informed by my conversations with Myjoey. I will also take liberties to give the parent perspective as well. Thanks again for reading. I hope you will return for the next installment.
P.S. I hope this is enlightening for all readers.